Blogging is therapeutic. For those living with or affected by infectious diseases, it can be a way to connect with those whose lives mirror their own.

Brooke Davidoff, diagnosed HIV positive in January 2010, blogs about her life as a newlywed and a first-time mom. Brooke’s life turned upside down during her pregnancy, when she had a routine blood test for HIV and discovered she was positive. “If there was no baby, I’d still have no idea,” she blogged.

Brooke started blogging “. . . to express myself, I don’t know how not to. When I was diagnosed, I searched for stuff written by other HIV positive females to relate to, and I had a very hard time finding what I was looking for. So I began to write it for other women like me who needed to know they are not alone.”

Sabina is a 15-year-old girl who loves volleyball and dancing. She’s slogging through a year of treatment for hepatitis C and blogs about it “. . . to share my experience of HCV treatment for children or adults who are starting or already started their treatment. I know that treatment can be difficult and painful, I would just like to give another perspective. I just want to help out and be there for other kids or adults.”

Elizabeth Boskey, PhD, MPH, calls on her education and research experience each time she blogs about STDs. Ever the teacher, Elizabeth says, “There is a lot of secrecy and stigma surrounding STDs. I blog about STDs not only to address the misconceptions about them, but to make them a topic of discussion.

“Some people think that having an STD means that they’re dirty or ruined, that infection marks them as a slut or somehow undesirable—all of which is ridiculous. Still, these feelings are common in people who have had bad experiences disclosing an STD to a partner, or who have simply internalized the stigma that is widely present in American society.

“People make jokes, and not kind ones, about STD infection, but the truth is that STDs are just diseases like any other. Yes, they are often preventable, and people should do their best to prevent them, but acquiring an STD doesn’t make you a bad person.”

Are you ready to blog?
It’s easy to get started. There’s no cost, other than your time, and, if you’re speaking from personal experience, what it costs you to speak from your heart.

Brooke blogs to share with women like herself, and to let her friends and family know that she’s OK. “I think I’m helping other people feel more normal…the stigma hopefully will diminish in time.”

Blogging can be a positive experience, but there are emotional risks.

“I think that if more people blogged about STDs it might help reduce some of the stigma associated with them,” says Elizabeth. “However, I think it’s important to acknowledge that doing so is not without risks. Publicly acknowledging an STD infection may change the way that people around you treat you. It may even affect your employment—although it shouldn’t.”

Boundaries
It’s OK to not share every single thing in your life. Write honestly, but don’t fret about keeping some details private. It is your life, so you define the boundaries beyond which you’re not comfortable sharing.

Readers
If you write about it, they will come, but be prepared for the readers’ thoughts that may cascade upon you. Some comments you’ll treasure and some, well, let’s just say they’ll raise the eyebrows.

“I check daily for new comments and emails,” says Brooke. “The ones that touch me the most are people who found out the same way I did, or the ones who decided to have a baby after reading my story.”

There’s a yin yang to blogging, as there is elsewhere in life. Be prepared for the nasties you’ll find in the comments section of your blog.

“Although blogging can be a wonderful way to gather personal support, it may also have less positive results,” explains Elizabeth. “Comments can be negative, or even cruel and vindictive. It may be worth blogging anonymously if you are concerned about your privacy and the ramifications for exposure in your daily life; however, it is very difficult to ‘guarantee’ that your identity will not become known. This is particularly true if you are discussing sensitive issues such as those involving your sexuality.”

Last words
Bloggers always get the last word, and that’s no less true for our guests today.

Brooke on HIV: I live a normal life other than taking pills every day. I’m waiting to see what the disease does to me. I think all of us sit and wonder when it’s going to kick in, and what it’s going to do.
If you’re having unprotected sex, get tested. You never know. There are really no symptoms that would lead you to get the test, it’s better to know and get on meds now than find out when it’s too late and you’re really sick.

Sabina on HCV: [I want people to know] that we’re not harmful to others as long as we don’t share blood transferring items, such as razors, and toothbrushes. And that having HCV [hepatitis C virus] doesn’t set you apart from others even though it’s a serious virus.

Elizabeth on STDs: I don’t think you have to blog about STDs to help destigmatize them. Make a point of having open and honest discussions of sexuality with your partners and your family. Don’t allow people to get away with making cruel comments about infectious diseases or even “cute” jokes. And, finally, remember that a lot of the stigma surrounding STDs has to do with ignorance. Educate yourself—about how common STDs are, about testing, and about prevention—so that you can educate the people around you.

Increase access to care and improve health outcomes for people living with HIV

Reduce HIV-related health disparities

Such broad strokes are perfect for the likes of Twitter, according to the AIDS.gov team. Twitter as a health communications tool is exemplified by the success of the recent National HIV Testing Day Twitter Town Hall.

A Twitter Town Hall, a group of people tweeting about the same topic at the same time (and using key hashtags), is an excellent method to reach a wider audience using social media with a relatively low investment of organizational resources.

The types of Twitter interactions may vary—from dialogue, to link and picture-sharing, to retweeting—but one thing is clear: different demographics can be reached using Twitter, versus Facebook, radio and television.

The Institute provides training and research, and acts as point of contact for the efforts to reduce HIV/AIDS in Botswana. In 2001, simultaneous to the opening of a state-of-the-art lab funded by the Institute, the government launched the Masa (or “new dawn”) treatment program, buying antiretrovirals and making them widely available at no cost to infected citizens. The research capabilities of the BHP, along with Botswana’s HIV/ AIDS education, prevention, and treatment efforts, are unparalleled and show impressive results.

Both the Masa and the Botswana-Harvard Institute aren’t easily replicated in countries without a similarly high level of financial and governmental support, but the lessons learned can still be applied.

Although it’s unlikely that most developing countries have the resources to accomplish what wealthy Botswana has done, it is a bit of bright news in the otherwise depressing struggle that is HIV/AIDS in Africa.

We know how to control HIV—we do it with antiretroviral therapy (ART). We’re so successful, an HIV infection is now a chronic condition rather than a death sentence . . . for some. For those with access to ART.

Before and after ART

But what about those without access? What about everybody else? As of the end of 2008, just 42 percent of those in lower- and middle-income countries were able to get these drugs.

Why is it so hard to provide this lifeline to those in need? A report put out in May 2010 by Médecins Sans Frontières (a.k.a. Doctors Without Borders), says it’s about the lack of infrastructure, particularly human resources, for the administration of treatment and care, including:

Inadequate salaries and poor working conditions, which lead to ‘brain drain,’ attrition, and an inability to attract new health workers

National policy barriers that block the possibility to shift tasks to lower level health staff

Lack of adequate national and international resources committed to address the health care worker crisis

Lack of donor funding for recurrent human resource costs, particularly salaries, due to concerns about “sustainability” and other constraints

Limits on spending from ministries of finance and international finance institutions, which can hinder governments’ ability to invest adequately in the health workforce

In addition to infrastructure, the AIDS charity AVERT suggests that barriers to universal access to treatment include:

A safe and sufficient supply chain of drugs

A life-long commitment on the part of patients to antiretroviral drugs (ARVs) and the ability of healthcare workers to help patients stick to the regimen

An awareness of the need for testing and treatment

This group goes on to explain that, “Focusing too heavily on treatment can also be problematic if it detracts too much from efforts to prevent new HIV infections, a scenario which would only add to the eventual treatment burden. Furthermore, unless treatment programmes focus on the vital tasks of monitoring and patient retention, many patients will eventually die from treatment failure.”

The real risk of reducing the work being done in prevention by focusing so much on treatment adds a troubling layer to the discussion.

So, there we are—the usual mountain of reasons why we can’t do what needs to be done. But, what’s a mountain? There are steps we as individuals can take to support universal access to ART:

Press our politicians to stop backing off their commitment to help fund HIV/AIDS services in poorer countries.

Find a reputable charity already in place and doing the work, then do a little fundraising of our own and give it to the charities doing the most good.

Keep talking about these challenges, and if we haven’t been doing so, then start talking. Silence isn’t an option, given the potential outcomes

Humans have adorned their bodies with tattoos for thousands of years. Even the Iceman, whose remains are about 5,200 years old, was so marked.

Why, then, is tattooing viewed with raised eyebrows by parents and secret longing by our youth?

As parents, we’ll put aside the whole “It’s a lifelong commitment and that cute butterfly on your arm is going to go all funhouse mirror on you when you’re old!” thing, and concentrate on questions of health.

We can’t speak for the secret longing of youth because those years have evaporated into the ether for us.

Tattoo regulations vary by state, and sometimes within a county or city. Some are governed by the health department, while others are regulated by the department of cosmetology.

While there are regulations, not all tattoo parlors are diligent in following safe, accepted precautions.

A professional tattoo artist takes pride in his artistry and safety habits, and will encourage you to ask questions. If you’re determined to get a tattoo, do yourself a favor and follow these suggestions:

Disclaimer

The information on PKIDs' Blog is for educational purposes only and should not be considered to be medical advice. It is not meant to replace the advice of the physician who cares for you or your child. All medical advice and information should be considered to be incomplete without a physical exam, which is not possible without a visit to your doctor.